Grief, Love and Life After Loss

Tag Archives: Loss

Four Christmases. That’s how many we’ve celebrated without our sweet Miss Elliott at home in our arms. She remains now, only in our hearts and memories. A life remembered becomes a culmination of ever changing milestones from the moment your loved one passed.

In church yesterday our class leader asked the group about their sense of time, and how they measure it. Nearly everyone gave examples of moments like x amount of time since graduation, x amount of time since we were married, x amount of time since my children were born, etc. I remained silent, but in my head I whispered to myself; four years and ten months since our daughter died.

I whispered this in my heard for several reasons. One, the more time that goes by people seem to know your answers to questions like these before you speak them. They already know you’re the lady whose daughter died. Furthermore, they don’t like to be reminded about it. Second, it’s also so solemn that I wind up not wanting to bring down the group, so-to-speak. And third, I worry that when I speak these things aloud people will think I’m looking for sympathy, which I am not. You learn over time, that outsiders don’t understand your loss or grief and you tend to keep it closer and closer to heart.

Our society does not want to grief to be something brought out of the shadows that they have to face. They’re much more comfortable knowing, somewhere in the recesses of their mind that although it does exist, for others, they do not what to come any closer to its unpleasantness.

Milestones of any kind for those who’ve experienced a loss can be overwhelmingly emotional. The holidays tend to amplify these for many people. We developed our own new traditions to incorporate Miss Elliott’s memory into our holiday routines. Things that made us feel happy and were right for our family. A way to honor the fact that we are still very much a family of four, even if Miss Elliott isn’t physically present with us.

One of these new traditions was to set up our Miss Elliott Tree. A little white tree, lit with white lights, covered in pink and purple ornaments. Miss Elliott’s favorite color was pink. Thought she would eventually become blind, lose her mental and cognitive abilities, and never spoke a single word due to being born with Tay-Sachs disease we knew it was her favorite because her older sister, Skylar, five or six years old at the time assigned it to her.

For the last four Christmases we’ve made a point to purchase new ornaments for the tree each year, and Skylar has even taken to setting it up in her room. We would carefully unwrap each of these special decorations and hang them thinking about how they represented Miss Elliott and her memory.

This year, after Thanksgiving we finished up our traditional tree in the living room, a tree trimmed entirely by Skylar for the first time this year.

“Let me do it. I think I know where you want the ornaments and how you like them,” she told me.

Now in seventh grade and on the verge of teenagehood Skylar has watched me carefully place each of the perfectly color coordinated and themed ornaments over the years and wanted to try her hand – on her own. I agreed, and she did so with perfect execution. It’s wondrous watching her grow and evolve into her own autonomous being. A touch of myself, a touch of Loren, and wholly her own person.

“What about the Miss Elliott tree,” she asked?

“You know, I just wasn’t going to put it up this year,” told her.

“Oh. Are you just done with it, then?”

“I think I am. How do you feel about that?”

“I feel done with it too.”

We told Loren about our decision, and he agreed. That was that. None of us felt the need or desire to set up the tree any longer. It had served its purpose for us during those first few difficult years after losing Miss Elliott. I don’t really see it as any sort of advancement through grief with this fifth impending Christmas since her passing. I don’t like that kind of terminology because it denotes that one day we will stop grieving her loss. As if grief over losing your child were something to move past. That there is some sort of end point to it. Rather, like most things our ideas and feelings about it have changed over time, and continue to evolve year after year.

Miss Elliott still holds the same place within our hearts that she has since she was conceived. And her memory is still cradled just as softly there as when she passed. We honor her life in so many ways, but we no longer felt beholden to this tradition to do so. The little white tree decked out in pink and purple isn’t something I needed to utilize in order to celebrate anymore, and that’s ok. I still continue to hang four stockings over the fireplace. To me, it’s a reminder that we are, and always will be a family of four. I cherish this thought and it makes me happy when I look up and see the four of them hanging there together. In a very small way, it gives me a sense of peace.

If you are grieving a loss this year I hope that wherever you are on your journey you find traditions that are right for you and your family. Ones that help you have a little peace in your heart and add joy to your holidays. Whether that mean keeping up time honored traditions, putting them to rest, or discovering new ones altogether; there are no wrong ways to celebrate your loved one.

I bought a desk this weekend. I had been needing one for some time. I work from home, and in addition to that, it would also be great to have a place carved out just for me to do my writing. A place where I can sit, in solitude and think or clear my mind. Focus on the words in my heart and put them on paper, or the internet, as the case may be. A creative space sectioned off from the rest of our home; like the sofa downstairs in front of the TV where I currently sit, feet up on the coffee table, laptop on my legs in our family room.

It’s not an office, per se, it’s also the guest room. And until last year it wasn’t even that. It was, in what turned out to be nothing more that vain hopefulness, (if such a thing exists) a pip-dream perhaps, our son’s room. A boy’s bulldog-brown painted twin bed, and matching dresser adorned the space where dinosaurs covered the bedding, curtains, and walls. After nearly three years of pouring out our heart and soul, not to mention time and money, into our pursuit of adoption it was time to face the fact that no son was to be called our own.

We simply couldn’t expend any more time, emotion, or energy to what had not only been a fruitless, but also psychiatrically draining endeavor. And I couldn’t look at that empty room a moment more. Out it all went, the day I decided to make it so, and a guest room, with a queen sized bed, night stand, and new décor replaced it immediately.

This weekend, I finally added a desk. And in doing so was able to clean out the old filing cabinet that now sat in the guestroom’s closet. A long overdue exercise in organization came about today as I went through the paperwork inside of it.

And there, tucked away inside the drawers were the remnants of a life. Mountains of paperwork I haven’t looked at in years. The new family resource packet from the National Tay-Sachs and Allied Diseases Association, the organization I now work for, that I realized only today, during my daughter’s illness, during her life I never even opened or looked at at all. Expandable file folders filled with medical information. Assessments, intake evaluations, and numerous other documentation relating to Miss Elliott’s diagnosis of Tay-Sachs disease, and care afterward. I found forms for orthotics, medically necessary seating and mobility information, recommendations for such, medication lists, notes from doctor visits, appointment cards, insurance statements, bill after bill for services rendered; neurology, genetics, feeding therapy, physical therapy, occupational therapy…and on and on…

Why did I still have all of this? Why had we brought it with us when we moved? Why hadn’t I gone through it until now?

I guess I just hadn’t tackled it yet. Little by little. Not that long ago this was our life. These regimens were our routine; our known normal. It’s odd to realize how little our lives now resemble the one we were so accustomed to just a few short years ago. And it’s strange how these things, that all add up to medical fragility, immense care, time, and love, are now utterly meaningless. One thing you hear from families of medically fragile children is how that when their child is alive these things come to embody who they are, and once they are gone, they’re just a symbol of the disease, not the child. Nothing but a stack of papers exists, in physical form, as the remnants of our daughter’s life here on earth. And day by day the reminders of their being gone, the lack of a physical presence creeps in and take over our lives. Like the desk, or the guestroom, which would have been her room had she still been here with us.

But, out they went, that stacks of papers. We don’t need those remnants to be able to remember her, like some shrine to her physical being. She’s not there inside of those items anywhere. They may be tangible, but they’re meaningless. She exists in our hearts.

We are rapidly approaching the time when it will have been three long years since our precious Miss Elliott passed away. A scant four months later and then we will forever enter into that tragic time period that we will live in for the rest of our lives; the one in which she will have been gone longer than she ever was here.

I worry about that time. I worry about her memory. To so many people that I meet she is now only a story, and idea, if even a remembrance, but not a living person known unto them. She is alive in my heart and soul. She is imprinted onto my being. I vow to spend the rest of my days spreading her message in her stead about the beauty, value, and importance of every life, no matter how short, no matter how small.

“Serenely I could while away the hours. Stay in contentedness with her forever, just staring at her beauty, stroking her face, holding her head and massaging her hands and feet. This was our life, the one we share. It didn’t look exceptionally pretty to others. It was expensive, but not fancy, cumbersome, and not at all convenient, imposing and difficult. No one coveted it. I kept it close, as close as I could, for as long as I could. No matter how unattractive this life was to others, it was mine and it was my most prized possession.”

-excerpt from Three Short Years: Life Lessons in the Death of my Child

It’s been just over a year since I published Miss Elliott’s book. I sincerely hope that everyone who reads it takes her message to heart and learns some of the many lessons she bestowed on us with her presence while she was here. She taught me so much about life itself. I am eternally grateful to have had the opportunity to be her mother.

1. Don’t Tell Me How Strong You Think I Am
I didn’t choose to be strong. I didn’t pick this path for myself. Being strong is not the badge of honor you’re implying it is when you’re trying to compliment me and my efforts at not completely falling apart. I’m just doing my best to carry on. If there are others in the same position who didn’t make it as far or couldn’t handle being strong that day, don’t demean them by telling me how well I’m doing. It doesn’t change anything, for them or for me.

2. Don’t Tell Me My Child Has Survived So Long Because I Take Such Good Care of Him/HerThe cemeteries are full of people who were “good fighters”, and children whose parents took just as good of care of them.

3. Don’t Tell Me You’re Glad You’re Not Me
Duh. I wish I wasn’t in this position either. Thanks for pointing out how crappy it is, I didn’t realize…

4. Don’t Tell Me You Could Never Be Me Or Do What I Do
That’s a nice thought, again intended to compliment or praise, but the truth is that none of us ever thought we could handle something like this and more realistically still…you’re only saying this because just don’t want to imagine having to. It’s a natural defense, the inability to conceive of such a notion, but unfortunately I don’t have the luxury myself.

5. Don’t Talk About How Things Will Be “When This Is Over”I don’t know how things will be, so you certainly don’t know how things will be. Furthermore, I can guarantee, that for any parent living through the terminal illness of their child “this” being over is unfathomable because that means their child will be gone.

6. Don’t Tell Me He’s/She’s In A Better PlaceAssuming you know me well enough to know my religious beliefs, even so, please refrain from offering this useless platitude. For a mother facing the loss, or impending loss of her child, even one who believes in the idea of a better place, this does not help. What the mind can logically process the heart can never truly understand, and for that reason it will never feel ok that our children are not here with us and in our arms.

7. Don’t Tell Me You UnderstandUnless you’ve lived the same life as me and suffered the same loss that I have, please, don’t ever tell me you understand. It doesn’t matter to me that your cousin, or parent, or dog died. It’s not the same. Even as another mother, your mind may allow you enough logic and reason to comprehend what the loss of a child is, but I tell you truly, you will never know what it is I feel.

8. Don’t Tell Me It Will Be OkYou don’t know that, and for some of us it isn’t. Don’t downplay the magnitude of this trial.

9. Don’t Tell Me It’s Time…For AnythingThere will be no “moving on”, there will only be moving past. Don’t tell me, based on your narrow outside view when it’s time for me to stop crying, start working, laugh more, yell less, go out, be social, or act “normal” again. I can’t predict when I’ll be ok doing those things, and you don’t have the authority to decide for me.

What you can do is:

1. Just Be ThereDon’t stop coming around because it’s difficult for you. I’m sorry that it’s a sad situation. I’m sorry you don’t know how to talk to me. I’m sorry you’re sorry. I may not be best company, or the funnest party goer, but I don’t want to lose the people around me on top of losing my child just because it’s hard for you. I don’t want to be forgotten about.

2. Let Me Be, Let Me FeelDon’t try to cheer me up or lighten the mood. Sometimes a mood shouldn’t be lightened. I need to process my feelings and get through my grief in my own way at my own pace. Sadness is a big part of loss, I won’t be happy all the time. Conversely, if I am happy, please let me feel my way through that as well. These emotions may change very quickly and I may experience them at inconvenient times, but it’s all part of the challenges of my learning to live life in a new way.

3. Tell Me About Your ProblemsI still care about what’s going on in your life. I still want to be included in what’s happening around me. Yes, I’m dealing with something big, but it doesn’t meant that I don’t recognize struggles of any size. You don’t have to keep things from me because you think I already have enough to worry about

4. Don’t Ask What You Can Do For Me, Just DoYes, my laundry needs done, yes my grass needs mowed, yes, dinner needs to be cooked…no, I won’t ask you for any of it. And chances are that when you ask if I need anything, I say “Oh that’s ok, I’m fine.” Just bring a meal, come mow the yard, make arrangements for my husband and I to have a night out, give me a gift certificate for a massage, take me to get a pedicure, include our other children in activities. Show me that you care about me even when I can’t reciprocate.

5. Don’t Forget About Us Down The RoadWhen a crisis hits people tend to rally, and fast, but ever so slowly they taper off and the large group surrounding you offering support diminishes. A year or two or even more on we still need to know that you think about us, that you remember our situation, that you still care. As time goes on our trials may be different, but trials we will still have. No one ever wants to look up and feel deserted. Keep checking in with us, and keep showing us you’re still there for us.

6. Say My Child’s NameIt will not upset me. I will not be hurt. I did not forget that he/she died. Show me that you didn’t either. Say their name, it’s music to my ears. Give me a reason to talk about him/her. I need to know that’s it’s ok to say his/her name to you. I think about my child as much as you think about yours. You may have already heard the stories and seen the pictures, but please let me keep sharing his/her life with you. I don’t want to make you feel uncomfortable, but he/she is a person who existed, and I need to know that you remember that.

If you’ve lived through the loss of a child yourself, I invite you to respond to this post with information regarding what experiences from friends and family helped you, as well as what didn’t.

Since we’ve returned from the NTSAD Annual Family Conference several children in our community have lost their battle with these devastating diseases. It’s oddly unsettling how these events; diagnoses as well as deaths, seem to occur in cluster form. Beginnings and endings. As is the circle of life itself, such is life as part of the rare disease community. When you’re dealing with diseases that only allow for a few years as a total life-span, unfortunately, this process is exacerbated immensely.

A little over a week ago, aside from the phone call and messages I sent via email, I ventured out specifically to purchase a card to mail to a family who lost their special little girl. She was just three years old. The same as Miss Elliott. She was her family’s world. Suddenly, the life they had known and were so focused on cultivating and maintaining, with a rigorous feeding and medication schedule, positioning and comfort care, as well as every attempt possible at memory making was gone. Just like that. Now her family has to adjust their routine to suddenly allow for the “freedom” (terrible word, as if their loved one had been a shackle), that they most likely do not want the luxury of having. This young girl’s older brother, the only other child in the family, will now be forced to live life not as an only child, but as the only living child, just like Skylar has had to do. Not what his mother had planned or wanted for him at all.

As the days passed and I had trouble knowing what paltry sentiment to express in the card, as nothing can do comforting justice to the loss they’ve experienced, and then missing the mail truck over and over, too much time had passed and at that point it would have seemed like more of an afterthought, so I never sent it. A good intention, but we all know what road is earnestly paved with those. The worst part of not sending this card was tucking it away in my drawer for future use. What a truly horrific thought. I already know that at some point yet another child will die and this card for sympathy in the loss of a daughter will be queued up for use once more.

Shortly after this child had passed, another took a steep turn health wise and suffered that same terrible fate. These precious, perfect children fight so valiantly, and yet the end is the same for all.

As if living through you’re child’s life and death as a very medically fragile, terminally ill person isn’t disturbing enough, a sort of secondary effect, or phenomenon of happenstance seems to occur with many of the parents like myself. At first, when your child is diagnosed with a terminal illness and you’re able to gain your bearings enough to carry on, you may experience some level of acceptance. Whether you want to or not, there’s no altering the course of your path so acceptance may come your way begrudgingly, but you have no choice in the matter. You decide you don’t like this, you hate it, but you’re paying your dues here, and as such are absolved of any future debt. The problem is: it isn’t true. You’re not in the clear to side-step cancer, car accidents, or any of the other atrocities of life. Once you realize you cannot control the future, even after suffering the world’s worst heartache, you’re back at square one, except you’re not. You’re worse off because now you live with the paralyzing fear that something will happen to your other child(ren) as well.

It seems that most mother’s in my position, those who have experienced the death of a child, all suffer from this phenomenal amount of fear that reigns over their lives and causes them to hover over their children’s every move. These fears are indeed paralyzing. A restriction from a typically functioning life, if you will. I can barely stand to let Skylar out of my sight. On play dates and sleepovers I’ll call the parents to ask if she’s “behaving herself”, when really the reason for the inquiry is to have confirmation of her wellbeing. I find myself not wanting to take her into crowds or even simpler places, such as the roller skating rink she so often begs to patronize (too hard to keep an eye out as she circles ’round and ’round). It’s unnecessary and controlling, logically I know this, but emotionally, I can’t help myself. No one ever, ever thinks they can get through losing a child. Once you’ve been forced to, you know you can, but you never, never want to have to prove your capacity for strength and resilience regarding one of your children ever again. You try as hard as you can to surround yourself in your own protective bubble and never leave its perimeter.

As the clustering of terrible news in our community continues, I learned that one of my dear friends, across the pond, as they would say, who has already suffered that unimaginable loss, was suddenly struck with another paralyzing blow. Her healthy older son, her only other child, was diagnosed with bone cancer. I read this information as it came across the newsfeed of my phone and my heart sank. It sank for my friend, but also for me. This was an incredibly selfish feeling to have, but I couldn’t help myself. My fear took over and my mind turned to my Skylar. I broke down and cried for my friend and the position she’d been put in. I cried at the thought of being her. The worst of what she said about it was that she had to explain to her son what was happening to him. The shock of such a notion. No one should ever have to entertain this thought. No one has to explain to our affected children that they have Tay-sachs, Sandhoffs, GM-1, or any of the other allied diseases. She now had the daunting task of telling her fully cognizant child what exactly he was facing. The definition of agony as a parent.

How does one do this? How does one find the courage to keep going, day by day, not only for themselves, but for their child as well? A Dragon Mother has no choice. A Dragon Mother puts her children first, every step of the way, and while she may be stressed, exhausted, worried, or completely broken down, she keeps moving along seamlessly because the protective all-enduring love she has for her child is a spring with an endless flow.

Dragon Mom: a term coined by my friend, Emily Rapp, the mother of a child with Tay-Sachs herself.

“We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice.

NOBODY asks dragon parents for advice; we’re too scary. Our grief is primal and unwieldy and embarrassing. The certainties that most parents face are irrelevant to us, and frankly, kind of silly. Our narratives are grisly, the stakes impossibly high.”

The mothers and fathers in my community are all Dragon Parents. We know that most outsiders are afraid of us, or rather, of becoming one of us. The thought alone is usually unsettling enough to keep them at bay. It makes it increasingly more difficult as time goes on to associate with those outside of our dragon’s lair, but matters to us none in the least. All that matter’s, at every turn, is our children’s here and now. This is the only thing we can concern ourselves with. We will fight for them with every ounce of our being. We will absorb the fear and frustration, the discouragement and pettiness of the rest of the world, and we will exude only love, in it’s purest form toward them. A mother’s love trumps all. Our bodies have at one time, miraculously consisted of two hearts, and our children are the only ones who know the sound of the beats of ours from the inside as well as out. Every beat of my heart is a call out to my children, and the beats of theirs, the echo back.

As Eater has come and now gone, I think back to all the pictures I see of families who visit their child’s grave and decorate for every season and holiday that passes by. Each flower or trinket so carefully placed atop the patch of earth concealing their children’s once precious and delicate bodies. A child so loved. An expression of that love that continues well past the length of their terrestrial life. These parents are there to respect their children’s physical vessel, to honor and incorporate them into their celebrations, and to keep them present in their own lives, as they’re forced to celebrate such occasions without them.

I didn’t visit the cemetery yesterday. Actually, I don’t visit the cemetery at all. I don’t lay flowers at Miss Elliott’s headstone, or even Easter eggs, Christmas poinsettias, or Halloween pumpkins. I just don’t go there. The cemetery is a cold, dark, and desolate place to me. I don’t feel her presence there. I can’t picture her there. She’s not there. I tired, out of respect and obligation, at least at first, to go and take part in all the typical and expected forms of displays of mourning. I took flowers, a stuffed lamb for Easter, little angel trinkets, butterflies, and even balloons on her birthday, but every time I went I hated being there. The hardest part was leaving. Driving away each time after a visit was as excruciating as they day of her funeral, when I had to drive away and leave her there, never to see her beautiful body again. That body that I had protectively held so close for hours each day, the hair I had stroked softly with my hands, the tiny fingers I held in my own. I would never lay my eyes on any part of her ever again. Those fingers of mine, which now sat idle begged to betray my mind and claw at the earth covering her body below. I wanted so badly to dig down to expose the four-foot pink casket that lay under the soil, and open it up to reclaim my perfect child. It disgusted me to know she (her body) was trapped down there forever. If I couldn’t get to her to hold her and be with her, why then did I come at all?

She’s not there. She’s with God. She’s with me. She’s in my heart. She’s in this house. Casa de Elliott; as I named our home when we purchased it. The home where she lived and died. Her bottles are in the cupboard. He clothes hang in the closet. Her memory flows through the walls. This home represents her life. The cemetery represents her death. So how will I feel to move away from her? Right now, her grave is within walking distance of our home. Is it a comfort that even though she’s not there, she’s so close? Will I walk away without a second thought as I intend to, or will I miss the cemetery when we move away? I suspect the latter. I suspect that even unconsciously the proximity of her body itself has always been a comfort to me.

We’ve recently decided to pick up and move away. We’re giving ourselves a fresh start and some much needed change. We’re excited at all the possibilities this move has to offer our family Our move will take us not too far away, but we won’t stay too close either. We’ll be around two hundred miles from where we are now. I don’t feel apprehensive about leaving her grave behind at all, but even that thought is worrisome. Grief can masquerade as many things in your life and trick you into thinking you understand or are okay with that which you in fact do not/are not. There’re so many thing we take for granted in this life and don’t miss at all until they’re gone. I wonder if a grave is one of them?